Deb Posted October 1, 2010 Share Posted October 1, 2010 I'm starting to feel like my life has been turned into some kind of soap opera......General Hospital to be specific. I'm definitely spending enough time in one to qualify. Where are Luke and Laura when you need them? The good news is that I finally have a good group of doctors working for me at the University hospital. They've been great in grabbing hold of issues and fixing them (the thyroidectomy) when they can be fixed. Even better is the way they don't shy away from something unusual and will work to find the answer. My pulmonologist is the best at that. He looks kind of like Doogie Houser and his bedside manner isn't the best, but that man loves a medical puzzle as much as House and is working just as hard to figure it out. They haven't been able to figure out why my oxygen saturation is so low. The real turning point came when I was in the hospital, propped up in a bed and on 2 liters of oxygen and my ox sat dropped to 77% for no reason. I'd been telling them that wearing oxygen didn't do any good but this was their chance to actually observe it. It definitely caused some concern at the time but the pulmonologist grabbed onto it as a major diagnostic event. The good news is that after running a slew of tests, my lungs have a clean bill of health. They're happy lungs with no wheezing, COPD, emphysema, fluid, fibroid tissue or any other issue. Yay!! The not so good news is that they think the cause of my oxygen saturation problem is due to a hole in my heart that causes the oxygenated blood to pass back into the heart instead of going out into my body. It's called a shunt and is a congenital heart defect so it's something I was born with. It wasn't a problem until my thyroid went berserk which put a lot of stress on my heart. There will be a couple of tests before they know for sure. I'm having the echocardiogram next Friday and there will be a CT scan done as soon as the fight with the insurance company is resolved. (they've refused the CT scan three times now because they don't think it's necessary) If they do find a shunt I'll be assigned to the cardiology team so they can evaluate it for corrective surgery. From what the pulmonologist said they'll go in thru the femoral or brachial artery with a soldering iron kind of thing and cauterize the hole shut. Hopefully the hole will be small enough that they can fix it that way and not have to put a patch on it. So that's the scenario the pulmonologist lined out and he seemed pretty confident that this is the issue. Everything fits into this diagnosis, even my up and down blood pressure, my high heart rate, and the gawd-awful sweats around the base of my skull every time I move. I thought I'd better let y'all know about this newest development. It's taken awhile for me to decide to share this because I feel like all I do is complain about my health problems but you guys are family and I wanted you to know. I have to admit to being a little unhinged by this coz I sure wasn't expecting something like a broken heart. I figured it would be something that could be corrected with a pill or inhaler or something like that so I'm a little shaky about it right now. However, the main thing that I see about this is that it has a solution. It can be fixed! I was afraid of emphysema so while hearing that I might have a holey heart is unnerving it's still better than hearing I have a disease that can't be cured. They can patch my heart and then I'll get oxygen to all of my body which will make lots of other things better. It's scary but yet it's encouraging because it can be fixed. Yay!! :groucho: Deb Quote Link to comment Share on other sites More sharing options...
Jo Med Posted October 1, 2010 Share Posted October 1, 2010 Wow Debs that must have been a real shock to find out that this is potentially something that you could have had all your life and not known about. The good thing, as you say, is that its something that they can fix and when they do, it will probably sort out most if not all of the health issues that you have been suffering from lately. Finding out that its related to the heart is a scarey thing but to the surgeons and consultants its probably fairly common procedure. I hope you get your CT scan quickly, the sooner it is confirmed the sooner it can be corrected. Good luck Deb - will be thinking about you Quote Link to comment Share on other sites More sharing options...
heidiiiii Posted October 1, 2010 Share Posted October 1, 2010 I have to say that this is a bit scary to me to but I think you are right Deb. A holey heart is way better then Swiss cheesy lung tissue. I bet they patch you up real good ( I smell burnt toast), and you will be good as new. Running, skipping, juuuu.. No. I see you polishing your broom and taking her for a well deserved spin around the block. Quote Link to comment Share on other sites More sharing options...
pats Posted October 1, 2010 Share Posted October 1, 2010 Deb, you've got a lot to deal with; don't ever feel that you're complaining. I'm finding that all the doctors I see are starting to look like Doogie Houser - ditto for policemen! (Hopefuly I won't be seeing as many of them though) Quote Link to comment Share on other sites More sharing options...
otterine Posted October 2, 2010 Share Posted October 2, 2010 Oh, Deb, I swear you've had enough issues for ten lifetimes! Enough already, right?!!! :groucho: We're here for you anytime you want to vent and/or complain. That's what pals are for. Sending you good thoughts and lots of hugs! Quote Link to comment Share on other sites More sharing options...
Starfire Posted October 2, 2010 Share Posted October 2, 2010 We are real family here, Deb, so let us hang in there with you ya hear? Hope they have finally nailed down the cause. Quote Link to comment Share on other sites More sharing options...
Esther Posted October 2, 2010 Share Posted October 2, 2010 Oh, Deb! You've had such a hard time of it! My heart goes out to you! I'll be praying that everything goes the best way possible and the fix will be an easy one! Billions of {{hugs}} to you! Quote Link to comment Share on other sites More sharing options...
havanaholly Posted October 2, 2010 Share Posted October 2, 2010 A septal defect usually shows up in newborns right away and gets fixed right on the spot, so yours must have been very small. I'm glad it's something relatively simple to fix! And you know we love you for your courageous sense of humor about all this! Quote Link to comment Share on other sites More sharing options...
Gayle Posted October 2, 2010 Share Posted October 2, 2010 Deb, please don't feel that way and don't hesitate to tell us what's going on. We're here to give you all the love and support we can. Don't make "Aunt Sary" come down there. She is with you every step of the way and so are we. At least your doctors are finally listening to what you're saying and trying to make things better for you. Sending you and Bruce tons and tons of hugs and saying prayers for the both of you. Quote Link to comment Share on other sites More sharing options...
pin1056 Posted October 2, 2010 Share Posted October 2, 2010 gawd woman drama drama!!! but now they know whats going on its all good news really My youngest had what sounds like the same 'hole' had it fixed and was a different person...instantly!!! i was sure they gave me the wrong child back :groucho: from such a placid girl into a 100 mile an hour jet!!! and i mean within 1 day...course she was only 5 and kids heal quick but even so....look forward to your new life i say :yes: zoooooooooooooommmmmmmmmmmmm Quote Link to comment Share on other sites More sharing options...
Muriel Posted October 2, 2010 Share Posted October 2, 2010 Very interesting development I think! much more interesting when it isn't happening to oneself though. Makes sense though! When lungs aren't to blame, makes sense that it is something wrong at heart level. Glad you've got the team on your side now and hopefully the insurance people will be convinced soon too. Continue to send positive and healing thoughts to you. Quote Link to comment Share on other sites More sharing options...
KathieB Posted October 2, 2010 Share Posted October 2, 2010 Deb, I'm shaking my head. Now that House's team has zeroed in, let's hope they're right and that the next step is mechanical. :groucho: Quote Link to comment Share on other sites More sharing options...
LLyn M. Posted October 2, 2010 Share Posted October 2, 2010 Such a time you've had! But I would say that you're working your way to perfection- and I hope that it comes soon.Sending Best Wishes and prayers to you.We all care! :groucho: Quote Link to comment Share on other sites More sharing options...
THmini2 Posted October 2, 2010 Share Posted October 2, 2010 Hey sister, don't ever feel like you are complaIng. You have gone through alot. But now it sounds like you have founds the right medical team. YeaH1 You kniow that we are here for you. That's why I call you sister as we are a big family here. You just concentrate on what you need to do. Lots of rest to get strong for the procedure and keep letting us know what is happening. Love you girl! Quote Link to comment Share on other sites More sharing options...
havanaholly Posted October 2, 2010 Share Posted October 2, 2010 Thank you, Theresa! Deb IS my baby twin sister, and knows 'way better than to think she can't share with me, but didn't! Quote Link to comment Share on other sites More sharing options...
Deb Posted October 2, 2010 Author Share Posted October 2, 2010 I can't tell you how much it helps me to have such a wonderful family here. You just don't know how much your support means to me. I'm getting a bit worn out with all the medical trauma/drama in my life. Sometimes it feels like I've ceased to exist and my medical issues are the only thing left of me. You guys can see past that and remind me that I'm still in here somewhere. A septal defect usually shows up in newborns right away and gets fixed right on the spot, so yours must have been very small. The pulmonologist thinks that it probably went unnoticed so it would have been passed off as just "failure to thrive" and being a lethargic child. From what I understand, especially after talking about it with my rheumatologist yesterday, the thyroid issues would have put so much stress on my heart that it caused the opening to get larger. After the thyroid storm I had years ago my heart rate never dropped below 90 and spells of arrhythmia are fairly regular which is a lot of physical stress on the heart. The last chest xray results said that my heart is larger than normal and that was attributed to the thryotoxicosis/Graves Disease. The pulmonologist thinks that's another indicator that the hypoxemia is caused by a shunt. I'm so glad that I found these doctors at University. I so want to go find the quack who told me I just needed to take anti-depressants and tell him that the heart defect he never considered would have killed me long before the thryoid cancer he said I didn't have. but now they know whats going on its all good news really My youngest had what sounds like the same 'hole' had it fixed and was a different person...instantly!!! i was sure they gave me the wrong child back from such a placid girl into a 100 mile an hour jet!!! and i mean within 1 day...course she was only 5 and kids heal quick but even so....look forward to your new life i say Linda, that's the most encouraging news I've had so far! Thank you SO much for sharing that with me! I'm not hoping for "jet", but if I have a dream in all this it will be to return to some kind of normal function in my life. I was tired before but after going hypothyroid following the surgery.......well, let's say that slugs and turtles are passing me in the fast lane right now. I spend most of my time sitting and staring at the wall. If I can get back up to Gramma-speed I'll be thrilled. I find it kind of strange that they're finding a birth defect at 49. I know that I tend to procrastinate but this seems a bit excessive even for me. Deb Quote Link to comment Share on other sites More sharing options...
havanaholly Posted October 3, 2010 Share Posted October 3, 2010 As my own grandma used to say, better late than never... Quote Link to comment Share on other sites More sharing options...
Selkie Posted October 3, 2010 Share Posted October 3, 2010 I'm so glad you have a team of MD's that truly care about how you are feeling and what your symptoms are. It's scary I'm sure, but at least they have the where-with-all to forge ahead and help you. Hugs and prayers for safety and a quick resolution to this all. Quote Link to comment Share on other sites More sharing options...
woodland_miniatures Posted October 3, 2010 Share Posted October 3, 2010 Deb, I have a friend who is now 48 and a few years ago they discovered a similar congenital defect in her heart. And went in and repaired it, and though she did say the recovery was no fun (cracking the chest for open-heart surgery in her case), she's done very, very well. She usually leaves me standing in the dust.....:groucho: You are, as always, in my thoughts and prayers. You've got what sounds like great help, finally, and they WILL help you! Big, BIG hugs, my friend! Quote Link to comment Share on other sites More sharing options...
LLyn M. Posted October 3, 2010 Share Posted October 3, 2010 I find it kind of strange that they're finding a birth defect at 49. I know that I tend to procrastinate but this seems a bit excessive even for me. Deb ...And your Famous sense of humor still draws us to you with wishes and hopes for great health..and very soon!! Hugs and hugs.... :groucho: Quote Link to comment Share on other sites More sharing options...
Merry Posted October 4, 2010 Share Posted October 4, 2010 It's scary but yet it's encouraging because it can be fixed. "...it can be fixed." - Beautiful words, Deb; like hearing music almost. Quote Link to comment Share on other sites More sharing options...
jbresr Posted October 4, 2010 Share Posted October 4, 2010 Im late as usual. Am so thrilled you have docs who will listen and take care of you. You are in my thoughts and prayers Donna Quote Link to comment Share on other sites More sharing options...
havanaholly Posted October 4, 2010 Share Posted October 4, 2010 Welcome home, Donna, I'd been wondering where you've been. So, Deb, have you any dates yet for the procedure? Quote Link to comment Share on other sites More sharing options...
Deb Posted October 4, 2010 Author Share Posted October 4, 2010 So, Deb, have you any dates yet for the procedure? We're still going thru the test process right now. The echo is scheduled for this Friday and apparently that's all they're going to get since the insurance company has denied the CT scan for the third time. <snarling> They keep saying there's no medical need for it. I dunno...........oxygen deprivation may have shut down a lot of my cognitive processes but I'm still pretty sure that finding out where the hole is my heart is at so they can fix it does constitute a medical need. The hospital told me that the insurance company advised the pulmonologist that he can appeal it but the appeal review will take at least 35-40 days. I called the insurance company to have a little discussion with them about their denial but their systems are all down today. The reason the ct scan is so important is because the echo may not be conclusive because of my weight. I think when I talk to the insurance company I'll use that one little word that they seem to understand better than any other: Lawsuit. Deb Quote Link to comment Share on other sites More sharing options...
woodland_miniatures Posted October 4, 2010 Share Posted October 4, 2010 Deb, Shakespeare had it wrong - he should have said, "First, shoot all the insurance executives", instead of all the lawyers.... :groucho: Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.